> Making informed decisions about end-of-life care – the role of palliative care and hospice (April 2011)
What is palliative care?
The goal of palliative care is to relieve or prevent symptoms associated with a disease (such as breast cancer) or its treatment. Examples of symptoms include pain, fatigue, anxiety or depression. Palliative care focuses on symptom control, rather than the control of the cancer. Palliative care treats the whole person: body, mind and soul. This means treatment to control pain and other physical symptoms as well as care for emotional and spiritual needs.
Palliative care is part of treatment for all people with breast cancer, in all phases of the illness, but it is especially important for those with metastatic breast cancer.
Metastatic breast cancer and palliative care
Metastatic breast cancer (also called advanced or stage IV breast cancer) is breast cancer that has spread beyond the breast and nearby lymph nodes to other parts of the body (such as the bones, liver or lungs). Although metastatic breast cancer cannot be cured, it can be treated. Treatment with chemotherapy or hormone therapy can control tumor growth and prolong life. For some people, this period of active treatment of the cancer may last for many years. Palliative care is a vital part of this treatment.
At some point, however, chemotherapy or hormone therapy for the cancer will no longer show benefit or improve quality of life. Talking to your health care provider about prognosis and the potential risks from continued treatment (when further benefit is not expected) can help you make decisions about your care.1 At this time, you may choose to stop active treatment for the cancer. Palliative care then becomes the main focus, rather than just a part, of treatment. Understanding the role of hospice and palliative care can help you make informed choices.
“Palliative care is integral to my management of the patient with breast cancer, whether newly-diagnosed, a long term survivor, or with advanced metastatic disease,” said Patricia Ganz, MD, Professor, UCLA Schools of Medicine and Public Health and Director of the Division of Cancer Prevention & Control Research at the Jonsson Comprehensive Cancer Center.“It is our responsibility as physicians to relieve pain and suffering, even if we cannot cure the underlying disease.No one should be allowed to experience unmanaged pain or depression when effective therapies are available.
What is hospice care?
Hospice care provides palliative treatment as part of a comprehensive approach to patients and their families, focusing on their physical, emotional and spiritual needs.It can help return a sense of control to people at the end stage of their metastatic cancer (or other terminal illness). Because hospice personalizes care, it can improve quality of life and allow a person to die as comfortably and with as much dignity as possible. Hospice care does not aim to shorten or prolong life, but rather to enhance the time remaining as much as possible.2-4
Central to the philosophy of hospice, care is usually given at home, where the patient is usually the most comfortable.2-4 Most often, a family member becomes the primary caregiver, with guidance and support from health care providers and trained volunteers. Hospice provides support services to both the patient and the family. A typical hospice team includes:2-4
- Registered nurse (who is on call 24 hours a day, seven days a week)
- Home health aides (who can help provide personal care)
- Medical director (who coordinates the medical care)
- Social worker
- Spiritual counselor (for example, a chaplain)
- Grief counselors (for patients and their families)
Although most people get hospice care at home, some areas offer in-patient care at a freestanding hospice facility (not as common) or at a hospital (more common) with hospice services. Some people prefer to get hospice in these settings and sometimes, certain situations may prevent someone from staying at home.
Who can enroll in hospice?
Hospice care can begin when a person:3-4
- Has a life exectancy of six months or less (as determined by a health care provider)
- Chooses to move from active treatment of the cancer to palliative care only
Although a survival time period is set for enrollment, hospice care does not have a time limit. A person enrolled in hospice may live longer than six months and hospice care will continue.
Who covers the cost of hospice?
The cost of hospice is covered by Medicare, Medicaid, health maintenance organizations (HMOs), such as Blue Cross/Blue Shield, and most private insurance companies. Hospice covers the cost of the health care team as well as any medicines, therapies, counseling, equipment and supplies related to care.4 An insurance provider can provide specifics on coverage.
Benefits for patients
Although active treatment for the cancer is stopped once hospice care begins, treatments to improve quality of life and ease symptoms continue.Hospice care aims to give a person the support he/she needs to maintain as much control over the situation as possible. Care includes:3-4
- Control of pain, nausea and other symptoms
- Treatment for non-cancer health conditions
- Emotional support for patients and their families
- Relief for caregivers
Hospice extends beyond physical health and offers care for the mind and soul. Although it is common to feel depressed at this time, some studies show hospice can help lower rates of depression.3,5-6 And, the hospice team includes support staff to help with practical concerns such as financial issues or child care. The team may also include a chaplain or other religious or spiritual counselor.
Benefits for caregivers and other loved ones
Hospice tends to the needs of the whole family. It provides special support to caregivers. Home health aides can help with daily care to provide a break for caregivers. And, for times when a caregiver is called away or needs a longer break, hospice care can be moved to an in-patient facility for a short time.4
The hospice team may be able to help ease some of the depression and emotional burden caregivers often feel during this time.3,5-6 Grief counseling for both the patient and the family along with bereavement (loss) counseling are important parts of hospice care.
When should a person enroll in hospice?
Many metastatic cancer patients choose hospice at some point in their care.7 However, some choose hospice too late to benefit fully. The earlier a person enrolls, the more time the hospice team has to get to know the patient and the family so they can give the best personal care possible.2,5 Moreover, early palliative care may also improve survival in cancer patients.5 Hospice at any time is helpful, but early care offers the most benefit for the patient and the family.
Discussions on end-of-life care are very difficult. Many people avoid addressing these issues until very late in their care.8-9 As hard as it can be to talk to family members and health care providers about end-of-life issues, these discussions help ensure a patient’s wishes are carried out.1,7 End-of-life choices vary greatly from person to person and may change over time. Early, open communication on these issues guides the hospice team and helps personalize care for each patient.
Many metastatic cancer patients prefer to die at home, but only 50 percent do so.7 Some findings show that people who die at home are more content than those who die in a hospital.8 Certain health conditions may make it impossible to stay at home. However, for some families, hospice provides a support system to help patients stay in their homes, if they choose to do so.
In February 2011, the American Society of Clinical Oncology released a statement on end-of-life care for patients with metastatic cancer. The goals included:9
- Patient quality of life should be a priority throughout metastatic cancer care.
- Patients should be well-informed about prognosis and treatment options, including a plan for palliative care alone when treatment for the cancer no longer shows a benefit.
- Patients should have regular discussions with their health care providers about options and preferences as these may change over time.
- Patients should have the opportunity to die with dignity and peace of mind.
Palliative care and hospice can make the later stage of your cancer care as comfortable as possible for you and your family. Most importantly, your wishes guide this care.
Read our End-of-Life Care fact sheet for more information on palliative care, hospice and other end-of-life care issues.
- Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol. 28(7):1203-8, 2010.
- World Health Organization. WHO Definition of palliative care. http://www.who.int/cancer/palliative/definition/en/, 2011.
- Urba S. Chapter 76: End-of-life considerations in patients with breast cancer, in Harris JR, Lippman ME, Morrow M, Osborne CK. Diseases of the Breast, 4th edition. Lippincott Williams and Wilkins, 2010.
- U.S. Department of Health and Human Services and Centers for Medicare & Medicaid Services. Medicare hospice benefits. http://www.medicare.gov/publications/pubs/pdf/02154.pdf, 2010.
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 363(8):733-42, 2010.
- Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 170(12):1795-801, 2004.
- Bakitas M, Ahles TA, Skalla K, et al. for the ENABLE project team. Proxy perspectives regarding end-of-life care for persons with cancer. Cancer. 112(8):1854-61, 2008.
- Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. J Clin Oncol. 28(29):4457-64, 2010.
- Peppercorn JM, Smith TJ, Helft PR, et al. American society of clinical oncology statement: toward individualized care for patients with advanced cancer. J Clin Oncol. 29(6):755-60, 2011.